No problem, I know what I signed up for. My intrusive thoughts are mainly sexually based. I'll fear that I'm a pedophile or that I'll touch a woman inappropriately. I'll fear being around children or women. Amongst other things, this has also ruined my career because I have work obsessions. I even have obsessions ABOUT my obsessions

Edit: really, no follow up stuff about being a pedophile? I was scared to admit it.

Kudos to you for getting help! To go through surgery to get a deep brain stimulator you must have been experiencing some pretty serious thoughts about women and children. Do you ever act on these thoughts and thus, you were forced to do this surgery?

There's nothing wrong with being a pedophile. There is something wrong with molesting children. Your thoughts never hurt anyone. Your actions could have, if you'd acted on them, but you chose not to. That's kind of the point. You chose.

Some people get a lot of anxiety. :/ Would you say you function normally? Do these corrections to the illness make you stand out in society, or would I not be able to tell? Sorry if this is kind of offensive.

I read that your intrusive thoughts are mostly sexual. I fear I might have something similar, sometimes when I talk to people it could male/female I get strange sexual thoughts about them, I am disgusted by them, and I just try to repress them. These thoughts do not in anyway excite, in fact they mostly make me feel upset and curious as to why I have them. I have never been diagnoses with a mental illness but I do have a tough time paying attention and staying on task mostly while doing school work. I am far to embarrassed to get help and ask somebody about this. As someone who has gone through this what do you think my best course of action should be? This "condition" is very disturbing and embarrassing. I just need some guidance.

The hardest day of my life was when I told someone about these thoughts. I was having delusions that the police were going to kick down my door, or that police helicopters were after me. So I thought by admitting to them, I was admitting to guilt.

Being open about these thoughts has lede to recovery, so I say tell someone in your family first. Then a therapist or psychiatrist. Then add from there.

Do you think it could be OCD, I know your not a doctor but... I just checked some of the symptoms and I have a couple, I often can't fall asleep (and have developed insomnia) because A. My brain won't shut down B. I often have repeating images in my head (not disturbing ones) just images or things that I had seen during the day, it could even be songs, they just repeat in my head the entire night and I can't force them out.

It's always tough to say. EVERYBODY has bad thoughts from time to time. Where it gets to be a proble is if the are really affecting your life. Are you avoiding anything because of them? Are you afraid you did something you didnt? Are you afraid you will do something but you won't be able to stop yourself? If so I'd say it sounds likely. But seeing a professional is the best thing you can do. There are ways to treat this, but doing alone isn't one of them.

Hi I just wanted to say these are symptoms of anxiety disorders. I was diagnosed 6 years ago with one. I remember before I got help and learned about the symptoms it was really hard for me. A lot of the time I felt like I wasn't in control of my thoughts and that led to a lot of compulsive behavior. Its difficult sometimes taking the steps to see a professional and for me I had trouble thinking I was "weak" because I couldn't help myself. But this is about quality of life and if the things you are experiencing are having an impact on your overall well being, seeking professional advice is the best thing to do.
Also please don't be embarrassed or ashamed to discuss the things you are feeling or experiencing with a qualified doctor. The things you could tell them are not going to phase them at all. Just imagine them as someone who browses r/wtf all day everyday.

I understand that, but everyone has weird thoughts; it's nothing to get worried over. If you think what it would be like to have sex with certain people, there's nothing wrong with it, even if you do it all the time.

Well I believe you are misconceiving what the thoughts do to you. You are viewing it from the perspective of someone without an issue. If you were plagued with horrible thoughts of something you find disgusting every time you, say, went to a playground. You'd probably stop going to that playground. Then you stop going to all the playgrounds, then you stop playing with kids that aren't yours. Then you stop playing with yours. Them you can't stand to see yours. It goes on and on like that.

I won't ask if it works, my thought is ..does it work well? do you feel like it helps you in ways other things don't?

I ask this as a person dealing with chronic depression and social anxiety disorder and after many years of therapy, diet changes, 'going out for a walk' and medication..the only 'solution' my doctors thinks will help me is to up my Zoloft dosage.

Does this DBS make you feel less imprisoned inside yourself like when you take medication? do you feel more free or do you feel as if its just a temporary solution to keep you from offing yourself by numbing you to the problem at hand?

Sorry if this is an insensitive question, I'm just..taking a chance in thinking you went through more treatments before coming to this one!

So medications actually worked really well for me. I got great benefits from them, it's just that the side effects were too crushing that I had to stop. The DBS makes me feel just like the medication (but better) without the side effects.

Best of luck with your issues. I'm a believer that medication works great, but if it is anxiety, I'd also suggest working with a good cognitive therapist that pushes you to do stuff you don't want to.

Blerg, you have no idea how glad I am that this exists. I tried EVERY SSRI, and the hall had horrible side effects. I was out of options.

This surgery is part of a study aimed at getting broader FDA approval so people in the future that are like me won't have to wait a year and jump through so many hoops. So hopefully my participation helps.

Great AMA, you're brave and helpful for talking about.
You mentioned batteries. How often will you need to go back to get them replaced ? Do you have a remote control of some kind to adjust it ? Are you supposed to avoid area, say with microwave oven or cell phone jammers or stuff ? When you first got it and turned it on, was there an immediate change or a gradual one ?

Since this is a study I was "blinded" for an unknown time so they could get unbiased info on the efficacy of the device (e.g. Placebo effect). Because of this they had to implant a regular battery that had to be changed every 6-8 months. They didn't want to give me the rechargeable since I would be able to see if it was using power or not. So I have to have that taken out in the next few months. They'll then put in a rechargeable that will last about 6 years.

They gave me a controller that I hold against my chest that can turn the device off, or switch between a few pre-established settings.

I have to avoid MRI, and ultrasound since they'd kill me. Also have to avoid metal detectors and things since it would turn the device off (which I would be able to turn back on again with the controller.).

Again, since this was a study I didn't know if it was on the whole time or if they would turn it on during one of my other appointments. After 3 months I felt it for the first time. I smiled for no reason. That might not sound like a big deal, but I was incredibly depressed, and I was smiling like I just heard a joke. A minute later thry tried another setting... I felt like I was on a rollercoaster. Like totally dizzy. That didn't scare me, it THRILLED me, because I KNEW it was on!

So there are thousands of potential settings for the device. Some make me exhausted, some make me sad, some anxious or manic. So working with a good programmer had been key. It's my feedback and his knowledge that help us dial it in.

So it's funny, but for all the science, they don't know exactly how it works. There are 4 electrodes on each extension, they shoot an electrical current from the stimulator implanted in my chest through a wire that runs along my neck into my brain. That current runs to the electrodes that they've paired for desired effect. They don't know if it inhibits or activates that area, but I'm thinking it inhibits since that is what SSRIs do.

Libido has actually improved. There's were making it piss poor, bit now it seems normal.

The breakthrough point for me was when I was having delusions that the police were in the helicopters that I heard above my loft in downtown LA. This was during the time that the NSA thing first got leaked about 6 years ago. I thought that there were images on my computer and that I was doomed. I even destroyed my old computer because I feared there were traces of images I never downloaded. So the sanity was still there in the sense that I knew that this was nuts. I knew that I didn't look at anything, but I felt I did. I thought I was having a paranoid breakdown. I was shocked to be diagnosed with OCD.

No personal assault. My grandfather inappropriately touched my cousin while I was in elementary and we "divorced" our whole family. So I think a molester or pedophile is one of the worst things you can be and therefore that is what I fear I am.

They all make me insanely tired. I was miraculously able to hold down a job, but I would walk through the door and fall asleep until the alarm went off for me to go back. Them in the weekends I would sleep about 40 hours to recharge for the next week. I was exhausted the whole time taking them.

It's tragic actually but I was involved in a study of my genome since I was having side effects from SSRIs. It took a year to get back, but when it did it told me what I already knew, I'm a poor metabolized of all SSRIs except ONE. One that I hadn't tried. Paxil! I would have sung the name of that drug to you I was so excited. After a week of taking it I had a constant burning in my muscles. It felt like they weren't getting enough oxygen. My doctor feared rhadomyolosis, we ran all the tests and it was clear. Since this was our only drug option, they put me back on it to see if the side effects would dissipate after a month. They didn't and we got off. That was over a year ago and I still have pain, but it has gotten worse. It makes typing this incredibly hard. I can only walk a block or two, I sometimes can't shower or get out of bed. They don't know why either. That's the worse part of it.

My brother has very severe OCD and despite many different medications and lots of (VERY EXPENSIVE) trips to top psychologists, he doesn't seem to be getting any better. Although you seem to have been courageous enough to take this giant step forward and accept this kind of help, I don't think this is an option my brother would take. What can I do as someone on the outside to try and help my brother move forward? Because currently he just sits on his laptop all day and despite seeming happy, I can't help but think he must be concerned for his future as I am.

I use the word courageous to describe you here and I don't use it lightly, but having suffered through severe anxiety of my own and watching my brother's OCD develop, it is really the only word that can describe overcoming the terror of being oppressed by your own mind, so I really applaud you and wish you the best.

The interference into my interactions with my son was it. I am crying as I type this but that was the biggest "fuck you" I had gotten from this disorder. It was robbing me of the wonderful innocence of my own son! That is when I was incredibly suicidal and at the end if my rope.

So I have to go in for more programming of the device, and I'll always have to go in for regular checkups. I'll have to have another surgery in 4 months to swap out this battery for a rechargeable one. The. I'll have to have surgery every 4-6 years for battery replacements. I'll still continue seeing a cognitive therapist for once a week, for who knows how long. Maybe forever.

Definitely. It's been hard, especially for my family. But I've appreciated their strength and support throughout this process. Hopefully my wellness will be enough to thank them for their sustained support.

Have you flown/traveled to a different country since the surgery? If so, what kind of special documentation do you need for your DBS since you are unable to properly go through metal detectors and safety measures such as that?

I was able to scrub into a surgery where they implanted a generator for a previously implanted DBS on a patient with Parkinson's disease. The surgeon dug out a pocket under the skin in the chest where they put the generator which was about the size of a small pager and then they threaded a wire under the skin connecting the probe to the generator. Assuming you have something similar, what is it like having all that stuff sitting under your skin? Do you notice it? I feel like if it was me I would be constantly fiddling with it.

I just want to say kudos to you. A few years back, I worked as a research assistant on a study of DBS for depression. I have so much respect for you brave volunteers. After just reading that you did this as a study participant, I want to give you a high five. I hope it continues to help you!

Do you have any mental strategities to control OCD without treatment? my friends mom definietly suffers from it and is deteriorating(constant laundry, constant cleaning nothing, talking to herself while smoking endless amount of ciggs) Second question is how much did the procedure cost?

Yes, the best thing your friend can do without treatment is to sit through the things hat make her uncomfortable without doing anything to alleviate that stress/fear. So if she touched a door knob and feels the need to wash her hands because she will get a virus and die. She should sit with that fear until it subsides. Then each time it gets less anxiety provoking.

Yes but that is definietly a really good method you described to do subconsciously somehow by possibly telling her not to do x, or to stay in the room and sit here and talk while she's feeling uncomfortable. thank you

Well its her mom who has the problem. probably from being very stir crazy from not having a job for years and collecting unemployment. I am close with her so I am sometimes there and have seen it first hand enough that i've been embaressed by how her mom acts in public when she gets out etc.

Excuse my naivety but is this on a par with ECT in terms of what it does? If so, are there chances it could impact negatively on other brain areas?

How permanent is it? I mean, can it be removed if you don't get on with it? It can't have been cheap, so I'm guessing it's not that simple.

As you're part of a study, how is the effectiveness of the DBS being measured? Obviously thoughts and emotions are all very subjective, so is there anything tangible that can be recorded?

What might the negative points be? The 'pros' must have outweighed the 'cons' for you to go ahead with it, of course, but does it have any negative aspects?

Does it preclude you from any activities, such as driving or certain jobs? That would be a deciding factor for me, I think.

I find this fascinating, and it's something I've never heard of. I presume you're in the US? I'm in the UK, so it's doubtful the NHS would fund things. Trying to avoid anecdotes here, but I've very long-term mental ill heath. Tried most therapies as well as SSRIs, SNRIs, and antipsychotics but plateaued long ago and marked down as 'treatment resistant'. Given the option of ECT which frankly scared me, even after thorough research. The biggest issue for me is 'will I work again?' and the outlook for the last few years has been grim on that front. It would be interesting to know if the DBS is something that could help facilitate a return to 'normality'. At this stage of my life, and having tried most other things, I would gladly volunteer as a guinea pig.

The whole thing is removable, and I'll just have the scars and the memories.

As far as the study, there are several things they are looking at. First we'd the blinded "test". Every time I go in for an adjustment I do several measures such as the YBOCS to measure in the most objective way you can about emotions.

Te cons of the surgery are really the surgery itself. While it is a pretty safe operation it's still my brain! There is always risk of brain damage. Beyond that the only cons are the scars and the side effects during programming.

I shouldn't make any large jerking motions with my neck. It has the potential to cause electrode drift. So things like intense roller coasters are out.

Oh I tried SNRIs as well as tricyclics. Spin know your frustration. I am on the US, so I don't know what your approval process is like. I know that there have been global operations (don't know the countries) though. About 100 all in all.

You can get an Anterior Capsulotomy. That is basically the exact same effect as what I have, but it is permanent.

Had you tried ECT before the DBS? I've debated and researched ECT a lot over the years, as it was offered to me (or rather I felt 'threatened' with it, but that's a whole other story). I feel there is simply not enough 'proof' of long-term improvement from it, yet many tales of other brain areas suffering detrimental effects. All that from a practice that has been around for tens of years. Despite being relativey experimental in the mental health field, DBS seems to be considerably more researched and monitored than ECT.

You say you thought about it for five years before going ahead. Was it something you approached with your doctor or was it suggested to you?

What were the prerequisites for being accepted onto the study? Were they physical or entirely mental-health based? Had you, for example, spent several periods of time as an inpatient, or did you have to try various meds in controlled trials before you were considered?

Thanks for doing this AMA. I have a neurostimulator for chronic migraines. How is your stimulator placed exactly? Do you have to charge a battery or anything? Ultimate question is how does your stimulator function!? I really hope yours helps you as much as mine helps me! :)

Edit: the side effects of my medications are also what lead me to discover my neurostimulator

Heyooooo stimulators in the hiZhouse! My battery is non rechargeable because it was part of a study. I get my rechargeable in a few months. It's placed near the thalamus, and so far it's been working great.

I can't speak for the OP, but I can tell you that frequent suicidal thoughts are rather shitty to deal with. I have what is known as "passive" suicidal thoughts. I think about it many times a month, daily if I have a lot of stress. I won't ever do it, but I frequently think I should drive into a tree, or wonder what I could take that would put me in a coma for six months, or think about myriad other ways to escape life. Again, I would never follow through, but I've been dealing with this for 30+ years and it got old a long time ago. If I could flip a switch and turn it off, I would.
Edit: I doubt that even comes close to suicidal obsessions, though.

Hey, I have been having very similar problems over the last year that have come and go. When the thoughts are there I become very depressed and believe I have no future. I don't want to have children or get in a relationship because I have horrible thoughts that I could harm someone. Then for a week or so I will feel totally normal again and be driven to follow my aspirations such as music. I want to live life. I believe that this is the only one I have, I don't want to rely on drugs or treatment. So far I haven't received either and I go through these bipolaresque transitions frequently. What I really want to know, Is there any way I can live a normal happy life without getting major surgical treatment or being addicted to drugs that change my personality?
Also I started smoking weed around a year ago which sort of coincides with the problems. I only smoke about two or three times a month on average. Do you think that this could be causing or contributing to my problems.
So far talking to my mum about it has been the best therapy.

Gosh, fascinating. I've just been diagnosed with OCD myself but mine is mostly compulsions whereas from the sounds of it yours revolves around the obsessions. Am I correct in saying that? If not, were there any compulsions that affected you as badly as the obsessions?

Just curious! Mine isn't bad enough to have to consider something like DBS (and I count myself an extremely lucky bunny for that), but I am still trying to get to grips with the nature of the illness and how it affects myself and other people. Thank you for speaking out about this!

Great question. For a long time I only thought I had obsessions, not compulsions. Working with my therapist I've learned this is very far from the truth. My compulsions are avoidance, reassurance seeking, checking mentally, and repeating mentally. It is tricky to catch them!

What brain region are they stimulating? Ventral capsule, nucleus accumbens? I ask because I am part of a research team that is working to figure out the neural mechanisms of DBS. We focus on understanding why and how DBS to the subgenual cingulate works in severe, intractable depression (and also why doesn't it work in some situations)? As a cognitive neuroscientist on the team, my part of the research involves trying to understand how stimulating a particular part of the brain affects other regions of the brain. Current findings suggest that rather than just stimulating one brain region, DBS produces downstream effects in brain regions connected to the DBS region. So the issue of 'targeting' certain brain regions has to do with both what that region does and what regions that are connected to it do. It would be great to hear your thoughts on the sorts of feelings/sensations you had when you first noticed that the DBS was on and working, as well as any feelings/sensations you have as the DBS is left on chronically.